In Their Own Words – Windows into Phillip’s World

Usually an older sibling looks after younger ones, but all my life I have cared for my brother, who has lived away from home since he was six years old.

Phillip is severely autistic. He is able to dress himself and enjoys looking good. He is unfailingly kind, endearing and loves to be helpful and busy.

But people with autism face real challenges in the areas of communication and social skills—and Phillip is no exception. He doesn’t speak. He understands when you talk to him about subjects with which he is familiar—although his responses can seem disconnected at times.

He communicates through a limited knowledge of sign language and sometimes uses a book of symbols, pointing to images that express his feelings and needs.

Like others who suffer with autism, Phillip has Obsessive Compulsive Disorder (OCD). When, many years ago, he was given the job of marking off the current day on the school’s calendar, it became a necessary daily ritual which he carried out even if he interrupted meetings taking place. Realizing that marking calendars was one of Phillip’s obsessive needs, I gave him several pocket calendars so he can now mark off each day with focused intensity.

An inspired educator once introduced Phillip to needlepoint. In the 21st century, needlepoint, a form of canvas stitchery, is often regarded as a tedious craft with anachronistic overtones. This is not surprising, considering that it goes back to the small, slanted stitches of Egyptian tent-makers thousands of years ago.

Since Phillip is meticulous and revels in repetitive tasks, he immediately immersed himself in this craft. I am an abstract painter and we often collaborate on projects. In fact, our creative collaboration provides a very special connection between our worlds: I design—creating colorful images on a needlepoint canvas—and Phillip stitches in a cornucopia of colors.

Needlepoint gives him a sense of security in and control over his limited universe. He feels empowered in sharing his latest creations and, like all artists, he is very proud of them. I would like to think his efforts would have made famed Bauhaus teachers and color theorists, Johannes Itten and Joseph Albers, proud as well!

Another window into Phillip’s world is a method developed in Australia in 1977 called “facilitated communication.” Phillip can communicate by typing with one finger as a trained facilitator holds his wrists in a comfortable leverage position.

There is some controversy about facilitated communication. Those who support this method believe that it reveals a literacy and a previously undisclosed, higher intellectual functioning in those with autism, and that autistic people exhibit a capacity for symbolic communication.

However, critics claim that the facilitator may influence the response. To avoid this, our family would ask Phillip questions to which the facilitator did not know the answers. Since his responses were accurate, we knew that the facilitator could not be manipulating Phillip’s responses.

Although Phillip spells phonetically, what amazed us was that they were organized sentences written in a rather formal structure (e.g. “I am very fortunate to have Lena as my sister. She is my best friend.”) Perhaps most importantly, this gave us an awareness of the depth of Phillip’s understanding. We already knew, from personal observations, that he was capable of conceptual organization and were relieved that Phillip, in this small way, could finally make his voice heard in the world.

Sadly, his voice is not always heard. Many people feel uncomfortable around individuals who are mentally challenged, and I have become aware that families who struggle with the challenge of disabilities face social isolation. People may perfunctorily inquire about Phillip but then quickly move on to another subject; very few go beyond polite questions to discover that Phillip is a person with strengths and weaknesses that extend beyond the label of autism.

Still, there are friends, who not only acknowledge Phillip but respect him and take note of his interests. They often send him cards, yarn and calendars—gestures of thoughtfulness that deeply move me.

Phillip is unaware of the great influence he has exerted on my own life. Through helping him develop skills and observing his creative process, I have developed patience, endurance and a depth of compassion I never knew I possessed as well as an acceptance of both the limitations and vast possibilities inherent in each of us. All of these qualities play such an important role in my personal and professional relationships.

And while I sometimes wish I could look inside his brain to understand the complexity of his world, I think of Phillip, my little older brother, as my personal gift. But like Phillip, I can’t put what he means to me into words.

This article first appeared on Guidepost.com and is reprinted here with permission.

This “In Their Own Words” essay is written by Lena Rivkin of Los Angeles, Calif.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

what a great site, such hope sadness and joy all in one. i cried , laughed and found hope. my 5 yr old grandson is autistic and i love him dearly. with this site i can see many of our own day and nights we have lived thru and the future ahead. thank you thank you

I am new to Autism Speaks. I have boy/girl twins that will be 3 on July 3. My grandson spoke a couple of words as a baby (then stopped) and then as a toddler said a couple more words (and has stopped). He has a OT and ST that have been working with him for almost a year. He has not been diagnosed – only developmentally delayed. He starts to a multi-handicapped school in August (along with his sister who will be in the peer group). Do I have hope that he will speak? Do you know percentages as relates to this? I have learned he knows the alphabet, his colors and numbers to 12 or so. I don’t have anyone to talk to that actually has children with autism spectrum. Also, was thinking of a pediatric neurologist diagnosing autism? Any input would be helpful.
Nancy

I, too like you have two of the little rascals, except mine are boys. I am not as brave as you are, though, and sometimes fear I am doing them a disservice by overprotecting them or possibly overprotecting myself. I am a single parent to them, unless I can get someone to venture out into public with me it usual becomes pretty chaotic. One of them becomes overstimulated rather easily, and the other wants to speak to and touch everything and usually throws a tantrum when I tell him its time to leave. Since its two of them and one of me, outings have become few and far between. Thank goodness my parents have a swimming pool and it is getting warm enough to go swimming YEAH.

Simply a beautiful & endearing story of your life with Phillip. Danny , age 8, loves his little older brother dearly! Alan is 27 & has Autism. We are blessed to be able to care for Alan at home and like you, Danny has gained such wisdom in his brief 8 years. Danny is one of the most compassionate, empathetic, sweetest little guy on the planet ! These gifts have been given to him through the love of Alan…his little big brother.

What a wonderful insight you have into your brother’s world. He is indeed lucky, as are you. Reading stories like yours reaffirms my belief that we are all members of a very special family to which I am proud to belong, thanks to my 41 y/o son, Ronnie.

Brother is weaving colours in a pattern which speaks.Sister is a woven fabric protecting and admiring her older brother.Tears are words unspoken on reading this essay.It would etch in memory for a long time to come!

Phillip sounds like a wonderful, interesting person. There needs to be so much more awareness for people with mental impairments. My son has non-verbal learning disability, epilepsy, OCD, and an anxiety disorder. He loves people, but as you said, he’s not always greeted with the same enthusiasm as he puts forth.
Being a single Mom, I totally understand the isolation that these families anf others feel. You pray for social acceptance and look for support groups to enhance their lives.
I hope that the world will learn to educate themselves to these special people, who can teach all so much about love, determination and acceptance.

Our older child is autistic and his younger brother is in the author’s position. This is a great story, and it talks about some of the issues that aren’t always mentioned, but that effect people with autism and their families, namely, social isolation and the path to finding skills and creative outlets. Our autistic son is 19 and one of my greatest hopes is that he will someday have a skill, or an interest that he can spend time on that he loves and that others admire, even a little. The social isolation is difficult, but if he had something he could make or do well, it would be so good for him. We have tried to introduce him to different things, as they have at the schools he’s attended, but the computer is his favorite. I will keep trying though, and I want to thank you for your inspiring story. Phillip is very lucky that you for his sister. Thank you again.

Hi my name is violia and I have an older brother with autism, he also lives from home. We share a love for music. I am very thankful for him and I appreciate seeing that I am not the only one. Take care

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Thank you so very much for your personal essay about your “older little brother”. I am impressed with your compassion and well written composition about Phillip. Our 6 year old son, Ben has autism. His brother Sam, is 3 and developmentally on target.

I am a certified teacher in Florida. I have taught many classes of children with autism, ranging from pre-kindergarten to high-school.
I had to tell you what a beautiful story you’ve written about your brother. If only everyone who has autism had someone in his/her life as special as you must be.

Very well put! Like so many of us, the joy that our “special” children, siblings, relatives, friends…bring to us,is so difficult to express or put into words. Nobody will ever understand unless they experience it.

I am a single mother of a thirteen year old boy with autism. Michael’s extreme OCD, aggressive, non-compliant, abusive behaviors (did I mention, he was a runner) have forced me to place Michael in a residential facility 220 miles (one way) from home. This was the most difficult, heart-breaking decision I ever had to make or will ever need to make. I swore he would never leave me!! The long,sleepless, violent, abusive nights(and days)we(his sister and I)experienced were causing much stress on my job and her education and for Michael as well. I was left with no other alternative. I had to work to support us and she was much too young to be living such a stressful, painful life, along with much confusion and chaos for Michael. He was the one who suffered the most. He was “expelled” from different schools, and forced many caregivers to quit. I could go on and on and on about the traumatic meltdowns and the scornful looks people gave us when out in public.

His sister and I love him dearly. She is a strong, mature, and loving person who, along with myself, has learned to have much compassion and understanding for all people, but especially those with special needs thanks to Mike. He has taught us so much, in so many ways. Michael can be very loving and affectionate and brings us such joy and laughter in his own quirky way.

Michael has been away for 3-years now. Even though he has had a rough ride, with many ups and downs, I think the facility is a place where he needs to be. I call him everyday, he pretty much listens. He is somewhat verbal, but cannot have a conversation, he is very echolalic. We visit him every other weekend and his father visits on the weekends I don’t, so somebody is with him every weekend. He loves and looks forward to home visits for holidays and a couple of times in the summer, but also needs and looks forward to going back to the facility because they can give him the predictable routine that he needs. He lives with other teens with the same or similiar dissabilities and is cared for by loving and caring teachers and staff. Scornful looks do not exist there.

So, for those faced with making the same difficult decision as I did, don’t beat yourself up. It might just be in the best interest for all.

What a wonderful story! My great grandson is autistic. He is only 2 yrs old, but he is teaching me so much. I love spending time with him and dealing with his little world. He is coming along so well. People with autism are so blessed to have loved ones who care and strive so hard to teach them, but I feel that I am the one who is being so blessed. I never knew how huge my heart was til he came along.

Lena
I really related to your story. I have an autistic son who is 14, Michael, and he is the light of our lives. His older sister Becky who is 16 is instrumental in his care, teachings, and connections he has in the world. He shows me that no matter what bothers me at home, work, or life, it is not that bad. He also makes me appreciate every book he reads, any response to a question, and his smile that is constant. You are an inspiration to all of us who have a life we wouldn’t trade for the world. Thank you